New Hope in PANDAS?

PANDAS...Have you ever heard of it? Yeah...I hadn't either until mid December. But that day definitely, for us, was marked as a day of new hope.  It began a whole new adventure in parenting our beautiful little girl and a whole lot of new learning for this work-in-progress Mommy.

PANDAS stands for Pediatric Autoimmune Neuropsychiatic Disorders Associated With Streptococcal Infections. Isn't that title enough to overwhelm any Momma's brain? A wealth of information can be found at www.pandasnetwork.org.

In December, Selah had another regular follow-up appointment with her neurologist. At the appointment I mentioned to our doctor how frustrating it was to see such progress in Selah to then wake up the next morning to all the anger and anxiety having returned. I know that with RAD (Reactive Attachment Disorder)  and PTSD it is common to have set-backs and various triggers can cause these setbacks. I had always attributed the setbacks to this. However, when I mentioned the set-backs to Dr. A, my words struck a chord with her. That is when PANDAS entered her mind as a diagnosis possibility for Selah. I then filled out a few profiles and checklists for things like ADHD, Tourettes, and OCD while they drew 8 tubes of blood out of her little arm. Sure enough, Selah was diagnosed with this bizarre disease. New hope, right? A reason for the continued anger. The oppositional behavior. The picking, twitching, grinding teeth. The random screams and uncontrolled vocal and physical movements. Praise God....new hope...a reason...somewhere to start!

PANDAS, along with its family of disorders called PITS and PANS, are spectrum disorders with different variations in cause, symptoms, and thus treatment. It is relatively new to the medical world and still controversial among doctors. That means that treatment isn't cut-and-dry. It is a "try this for now and we will tweak it as we go" approach. Tweak it over. And over. And over. Add in dietary changes. Maybe try a naturopath. Incorporate supplements. Then test again.

We started with a regimen of Azithromycin, Cephalexin, Omega-3, Ibuprofen, multi-vitamin, and probiotics. Within three days we witnessed an amazing transformation. The antibiotic regimen was for 2 weeks. Within 3 days of being off the antibiotics, the symptoms somewhat returned. Within another day of being off the ibuprofen, the symptoms completely returned. Back to square one. We did another 2-week course of the antibiotics and the same scenario played out. Now she is on the antibiotics for an indefinite time. We thought for sure when we started a 90-day course, it would all be good. But...no.  Sadly, with this disease, whenever the patient comes in contact with an infection or virus, a flare will occur. So, unless we all live in a bubble, Selah is subject to the virus and carriers of the virus often. The winter was the worst.

The next step is to have Selah's tonsils taken out. This will help to eliminate the possible harboring of bacteria in her system and help to make her less susceptible to the illness. We have this scheduled for May 31st. Two days after school is out. I'm praying this will help her and that the trauma of the surgery will not impact her negatively. I'm praying for God to instead use this as a furthering step of her complete attachment to us and that it provides her relief from the constant anxiety-filled "attacks" she suffers. After that, if she is still is not healed, the next step is to have IVIG (intravenous immunoglobulin)which basically is a series of blood transfusions of  healthy antibodies that can in a sense, reset or reboot the immunity system allowing it to start functioning in a healthy manner and stop attacking her nervous system. I don't know when it will be, but I am believing and thanking the Lord in advance for her good health.What a glorious day it will be when this little princess can be at peace inside herself and take in and reproduce all that she is seeing, hearing, and learning.

So much of what we were learning made sense for us. We didn't have the typical experience of a parent who had a healthy child who began having all these symptoms all of a sudden.  We didn't witness the acute onset of symptoms. But, what it really does explain is why, between our first visit and our pick-up visit our sweet girl had changed so much. It explains why things seemed to get worse. We had the million-obstacles-between-two-trips version of an adoption story which kept us away from our baby for seven excruciating months. The first visit was filled with so many positives. We felt comfortable with her orphanage. We bonded delightfully well during the first week. We saw some hyperactivity and some orphanage behaviors, but nothing alarming. We left and the staff was more than happy to try to keep us connected between trips and happy to help wherever possible. During the first couple of months, things went well and we even were able to Skype. But over the time, things slowly deteriorated. The Skyping stopped without explanation. Phone calls were shut down. A couple of times all I heard was a crying little girl on the end of the line. I heard that she was often sick, as well. When we went to pick Selah up, the tone had completely changed. Things broke my heart. Selah was not healthy. She was frail. She had pulled out a great deal of her own hair. She was filled with fear. She was filled with rage. Her orphanage behaviors had magnifed significantly.  Our first weeks...well, months, actually...home were, but for the strength and grace of God, barely survivable.

We found that Selah had many more medical and emotional issues than we could have dreamed possible. Because of the many medical issues that were found, I requested to have her Bulgarian doctor records translated. I don't know if others receive this with their children, but we received a doctor's log of every medical visit since Selah was a baby. It was all in Bulgarian, but in order for us to see if their were any correlations or things that could help to enlighten our doctors, we were able to get this translated. We found out that in those seven months between visits (September-April) Selah had five episodes of "severe respitory infection". I do not know if that was pneumonia or bronchitis or what...but that is a lot of sick. That could have been when this "strain" (for lack of a better word) of PANDAS struck. It attacked her neurologic system and caused behaviors that were more than the staff at the orphanage could bear to deal with. I know how hard it is and I love her with every fiber of my being...how on earth would people who had the responsibility of so many little ones, so little money, and so little support be able to handle her? I believe this is when the tone that broke my heart took shape. This is where and when so much of her trauma began. I won't elaborate...but know that I have cried out to God asking Him why He didn't let us get back to her sooner? I've wrestled with it a lot, but in the end I knew that I had to lay that down because I will never know that answer. That is one saved for the day I come face to face with Jesus.

I do know He was there with her, though, as she struggled. I see how even in the midst of so many learning and communication issues ...she knows Jesus. It's one of those things that you sense in her heart. Yes, we love the Lord and I take as many moments as possible to teach my children about Him. Yes, we go to church. But what she has is hers. It's authentic...as though she knew Him before I gave words to Who He is. He was there. When she falls and gets hurt, or is about to get her blood drawn, or is scared, she calls out "Jesus, help me" with INTENSITY I might add! I didn't teach that. Our boys do not do that. That just came up from within her.

I also know that we learned to fight HARD for our daughter. To not waiver. To not give up. To not let our emotions EVER get in the way. Our adoption story was full of twists and turns and miracles. It's all on here...all the way back to the first day we saw Selah's picture in January of 2010. We thought we'd lost her then, but my heart wouldn't settle with that. God kept saying to have faith in Him. All those "skills" we learned through the adoption, was in preparation for the battle that would begin once she came home. The battle we are still fighting now!

Even though life is a constant beautiful challenge, we have managed to have many many great moments and good times! Christmas was wonderful this year. The antibiotics were working well and Selah was so peaceful. Our family time was such a treasure....so many great memories! There have been lots of basketball games and tournaments for the boys, birthday celebrations, Gotcha' Day (or Selah Day as we call it), and family getaways! Their favorite was our trip to Hawaii and a 4-day trip to Disney Land and Sea World with Grandpa, Grandma, Aunt, Uncle, and cousins! Lots of busyness and the grown-ups needed a vacation after the vacation, but so many treasured family memories!

This year Selah really seemed to understand what Selah-Day was all about. She surprised me as she told one of Zachary's friends about how she lived in Bulgaria, Mommy and Daddy came to get her from the orphanage and gave her a family, jeans, and ice cream! Ha! I smiled big at that one! BUT, she got it....she knew why we celebrated that day. That is huge for her!  She also has started referring to a few things about Bulgaria and I think she understands. She still has never talked about many specifics...only a few random comments here and there. She has talked about some scary things and about not wanting to go back which is heartbreaking. Her expressive language is still very delayed (which can also be attributed to the PANDAS) which makes it so difficult to determine exactly what she does and doesn't know and how she feels about things. It gets better slowly but surely and we are working diligently to help her identify feelings with language. I know that her knowledge is so much higher than we can even guess, though. We have always felt her receptive language was amazing and last month were confirmed in our beliefs after the results of her neuropsychological evaluation determined her grasp of the English language was at the level of  an 8-year-old! That is pretty amazing for two years of English and all the complications she has had to deal with during that time, as well.

I always have hopes to update my blog more, but I guess I'm just not that great at documenting my emotions and daily life in the moment. I need processing time before I post and that processing time is truly not a luxury. I've at least jumped back into life at church and with other volunteer efforts which has felt so great to be involved with again, but the processing time comes late when I'm too exhausted to process! Ha! Vicious circle, huh? Someday, though, I'll get it back :-) For now, it's one step at a time....

I'll leave you with a few of my favorite photos from the last several months. SO tough to choose!!!

Very exhausted trio in Hawaii in September!

Daddy's little princess

Happy Halloween!

Merry Christmas from the Schumakers!

Landon is 8! Happy Birthday to my little Basketball Star!



Zachary chose baptism in February! What a special day!

Ready shoot!!!!

An 11th birthday at Benihanas with Grandparents

I showed him this photo and he rolled his eyes and gave me the "Oh, M-O-M"! He is getting that pre-teen attitude already :-(

A crazy Mother's Day!

Some fun on a water slide in the middle of a basketball tournament in Palm Springs! Gotta fit the fun in wherever you can!

 



We can make our plans, but the LORD determines our steps. Proverbs 16:9



Blessings and smiles,